To further motivate me I've made flight reservations to Everest!!  LAX to Bangkok, spend a few days there, Bangkok to Katmandu, up the hill, down the hill, Katmandu to LAX.  Woo hoo!

Ok people, I'm going on another group hike tomorrow.

 "Lake Shore Trail (Easy 3.3mile Scenic Hike)"

I hope the highlighted words will be further defined in my favor.  Of course, I'll provide details after the adventure.  Keep good thoughts!

Today I went to a round table discussion sponsored by the Michael J. Fox Foundation for Parkinson's Research.  It was fascinating. There are so many things on the horizon, and the Foundation is just pouring money into the research.  Keep the faith!

Multi-Tasking

I can't multi-task any more to save my life!  There's a lot going on today, including a new video - you'll see it here first!

GREAT news.   I think we may have a venue for the fundraiser this spring!  My lips are sealed but it's a wonderful place -- very glamorous and old-world.  I'm old enough to have watched Andy Hardy movies every Saturday morning when I was a little kid.  Anyone remember Andy and Judy Garland, "Hey, kids! Let's put on a show!"  (Oh Lord, I'm old....................)  Well, we're putting on a show!

Stay tuned, kids! 

p.s. Oops!  Wrong building. THIS one is in a beautiful suburb of D.C. -- all glass, just amazing.

(and thanks to my friend Val and her amazing connections!)

I have a touch of what I call "Parkinson's brain".  It's been acting up lately.  I can't remember things!  It's really frustrating.  Losing my short-term memory was one of my first Parkinson's symptoms.  It's worse on days when I'm tired, or when I'm stressed.

I've found this wonderful on-line brain trainer.  I play it at least three times a day. I highly recommend it even if you don't have Parkinson's!  it's called "Lumosity" and it's an app.  You can get their iPad/iPhone version called "Brain Trainer".  Check it out!  www.lumosity.com.

My Mother, My Journey, My Bucket List

I told you that my next video would be a little more upbeat.  Well, I had just a bit more to say.

 © Evelyn G. Heilbrunn

 RANDOM AND IRRELEVANT THOUGHTS OF THE DAY, BUT WHO'S ASKING?

I've always liked watching TV, but when I was first diagnosed with Parkinson's and during surgery and treatment for breast cancer, TV was my best friend.  So ok, I'm addicted.  (Gotta have one vice!)

• I admit it -- I'm totally addicted to reality TV.  Bravo is MY channel.  The Housewives of (whatever) are my absolute favorite!  What a bunch of train wrecks.  Chick fights galore and lots of high school-like arguments and relationships.  The Shahs of Sunset is a hoot. 

• On TruTV I like Hardcore Pawn, about a pawn shop in the Six Mile area of Detroit.  Oh, the drama!  And of course, all of the talent contests: American Idol, The X Factor, The Voice (my favorite), So You Think You Can Dance.  There are others but I've embarrassed myself enough.

• Do you watch Homeland on Showtime?  THE BEST show on television by far.  If you watch it, do you think Damian Lewis's mouth is a little small for his face?

• I am a hardcore glued-to-the-set sports fan.  In addition to the regular stuff I even watch golf and NASCAR (there's a real strategy to it!).  August to April is fabulous.  Football (college and pro), baseball playoffs, basketball (mostly pro until March Madness), and NHL hockey (except for this season -- both sides are a bunch of selfish babies. The season is a wash.)  

• Then we hit summer and Washington Nationals baseball.  Mark my words -- World Series by 2015.  Yep, it's a long season but have you ever REALLY watched baseball? There's a strategy to it!  (Heard that before?) I used to score games when I lived in California.  We had season tickets and there is nothing more relaxing than sitting in the sun just down the 3rd base line with a score sheet in your lap.  I was at the park when Barry Bonds broke the home run record (the cheating bum).  It was magic.

Ok, that's it for today. 

Good Sunday morning!  The saga continues.  Fear can get the best of you when you're faced with an incurable disease or a life-threatening illness.  Here's how I look at it.

(p.s. Once I'm done with the serious stuff some humor will enter the fray - I promise!)

I'm just blogging away this morning.  I've been thinking about my Mom a lot lately.  She passed away when she was 44 and  I was 23.  I never knew whether she would get Parkinson's or breast cancer, and I've been ruminating over that for a while.

It's a terrible thing to lose a parent, especially when you're young.  I have had so many questions that, especially for a daughter, only my Mom could answer.   I talk to her quite a bit but sadly she doesn't respond (although I think she has, once -- different story for a different day).  It's been a long time but I still imagine what she would say.

Here's a picture of us.  I was probably somewhere between 1 and 2 years old.  I treasure this old photo.  She was so beautiful!

Random Thoughts

Ok, here's something new!  I've noticed over the last week or so that my hair is thinning.  I finished chemo in March, so I have NO idea what's going on.  Of course, as do all survivors my mind immediately goes to "metastases" and "it's back".  But really, I don't see a connection.  I have a thick head of hair and this is pretty noticeable.  Hmmmm..................... stress?

We had to put our dog down this week.  Layla was a Bernese Mountain Dog.  We've had four of them -- the sweetest dogs you'll ever know.  She had lung cancer and she was so miserable!  Still at home is Marley, her litter mate.  He's a gentle giant.  I truly think he's in mourning.  He's acting very strangely, and he lies near the front door most of the time -- like he's waiting for Layla to come home.  It just breaks my heart!  Here's a picture of the two of them, Layla in front?

I'm really busy these days - Everest has become my full-time job!  I'm training like a madwoman (thank much, Jamie), tweeting, messaging, Facebook-ing, and planning a spring fundraising event. If it goes as planned it should be a rockin' party.  We're planning to hold a silent auction and have a celebrity MC along with some pretty good keynote speakers.  Of course, the best one will be..ME!

I've been flailing around trying to figure out how to make this happen.  I have two wonderful friends who are helping me and who know a lot more about this stuff than I do. I hope to add a few more friends to the mix.  The ideas just keep popping out -- way too many for a Parkinson's brain!

So I've mentioned how  this amazing series of events/coincidences/miracles surrounds the Everest trip, right? Chalk up another one!  A wonderful woman and stellar event planner has entered the fray via a request I made on a local e-mail network.*  She's going to help us pro bono.  How absolutely cool is that!?  We met yesterday over coffee and she just glommed onto the whole thing in about two minutes.  First order of business is to find a venue and nail down a date.  She (and my awesome team!) have some terrific ideas that we hope to chase down over the coming week.  While she does the "grunt work", as she called it (we'll pitch in, of course), the rest of us are going to work on the silent auction -- not a small task.   I  More to follow!




*neighbors-international.com.  The network, founded by Sharon Rainey, started as a small e-mail chain among parents of kids in our local elementary school.  Sharon has grown it into a thriving business that covers much of Northern Virginia!

Yeah, I know I posted two videos - not the "one" I found - so what??

Dang!  I may not be the most technical person in the world (actually, I'm dead last), but I sure don't see some of the videos I've done!  I can only find one of them.  So I'm attaching the links here.  If they're already in the blog somewhere, my apologies.  But get used to it!  Parkinson's brain is a dangerous thing -- I repeat myself constantly!
By the way, there might be other videos but I just don't remember!  More to come, that's for sure!

https://www.youtube.com/watch?v=2yONdj9TanQ

© Evelyn Heilbrunn
all rights reserved

Botox in my neck?? For Parkinson's?? Yep.  Got it today.  From behind (above the waist, of course) I have the back-of-the-neck of a 25 year old!  Anyway --

I have cervical dystonia.  The muscles in my neck, particularly on the left side, are really tight and they hurt.  My doctor very kindly gave me this explanation about cervical distonia and Botox:

"it partially and temporarily blocks the nerve from communicating with the muscle so that the muscle does not contract as strongly each time the nerve fires.  The problem in dystonia is not the nerve but actually the brain sending too strong of a signal for the muscle to contract.  But this is our best treatment to interrupt that “too strong of a signal” from reaching the muscle and causing the muscle spasm which we refer to as a “dystonia”.

It takes about a week to work and it lasts for @ 3 months.  Pain free -- woo hoo!  I took this very lame picture of the syringe of Botox!

©Evelyn Heilbrunn
all rights reserved

Boy, I think I'm gonna love blogging!  What I'm enjoying so much is reaching out to people with either breast cancer or Parkinson's, who are scared, lonely, concerned, have questions, or
just want to talk.  I feel like Frasier Crane -- "I'm listening." 

I've never really been a joiner.  Group hugs aren't my thing.  So connecting with people who are dealing with or are fighting cancer, or who live with a frightening, progressive disease, is very comforting to me.  Finding people in the world who've felt what I've felt, had the drugs I've had, who know what it's like to fall and be scared to get back up --  means everything to me.  If I can help just one person take a sigh of relief, or step out the front door with one less worry, my day has been made.

And for those who offer me one piece of advice, a kind word, or a bit of comfort -- my day also has been made!









 ©Evelyn Heilbrunn
all rights reserved

I think I've told you that I'm a retired lawyer, right?  Well, I'd like to tell you about the last weeks and months of my job and how desperately I tried to hang on while I was losing my memory and measurable control over my body.

Parkinson's does weird things to people.  There's no set of symptoms that applies to everyone. Tremors, a shuffling walk, and dementia are probably the ones you've heard about.  There are many others though, and some Parkinson's patients only have one or two symptoms.  I have about five, which are @ 90% controlled on medication except for one: my short term memory.  It's @ 50% there, which is an improvement!  I work very hard to keep what I have.  I do various "brain exercises" every day -- puzzles, easy math, matching games, that sort of thing.  I talk to myself, which drives my family nuts.  But it's my way of taking notes -- if I walk around and repeat to myself what I need to do it helps me remember.  My husband and kids have a rule -- if I don't specifically say their names I'm not talking to them.  It saves time!

My first PD symptoms, as I've told you, occurred in 2008 about a year before I was diagnosed.  I had movement and balance issues and of those, the balance was most significant.  I fell a lot.  I began carrying a cane and I sometimes used a walker.  But honestly, when it came to work that wasn't such a big deal.  Frighteningly, I was beginning to lose my short term memory.  At first it was small things, like leaving my glasses, keys, or a pen somewhere.  But as the months went along, and my physical symptoms got worse or new ones appeared, my memory loss became more significant.

I was a trial lawyer, and I litigated patent infringement cases.  That requires a lot of brain power, as you can imagine.  BPD (before Parkinson's Disease) it was a very difficult job to begin with.  It helps if you're an engineer -- I wasn't, I was a nurse. I had many lawyer/engineer friends who spent time teaching me the way of patents.  With a lot of effort I gradually got comfortable with the language, theories, and ideas of patent litigation and I truly liked my job.

When my PD symptoms started to appear in 2008 I thought I was just over-worked and tired.  At work, I started to forget things; not like "where did I leave my glasses" but "what is that thingamajig next to the doohickie" (referring to a patent, of course).  I've always been a pretty likable person so I relied on that to cover up what I feared was a serious problem.

As the months went on it became nearly impossible to use my "scintillating personality" to cover up my memory loss.  Patent litigation is an intense, high stakes field of law.  It requires a sharp mind that can withstand 60+ hour work weeks and loads of travel. I knew I was losing it but I frantically tried to hold on.  I wasn't dedicated to my career, it was a means to and end.  I had to work and I saw it quickly slipping through my hands.
One event that stands out is an early morning deposition I had to take in Taiwan, which is exactly 12 hours later than Eastern Standard Time.  When you're in a completely different time zone naturally you get a little messed up.  But what I experienced was worse than that. I began the deposition and I could remember absolutely nothing about the patent at issue. Nothing.  There I am, staring at the witness trying very hard to remember what I was supposed to ask him, when my savior -- my associate who accompanied me to Taiwan -- stepped in.  He started handing me notes and documents that were intended to jar my memory.  To this day I'm grateful to him for saving me from near panic and meltdown.

After I returned home my work situation started on a rapid downhill slide.  The harder I tried, the more I forgot.  I knew that it was becoming obvious to everyone -- I imagine they thought I was just stupid.  I was finally diagnosed with PD in August 2009.  I retired the next day.  I have to tell you, it was such a big relief.  Have you ever had a dream where you go take a final exam but you've never been to the class?  I lived that.  It was the most frightening time in my life.  To not have that hanging around my shoulders anymore is blissful. 

As I sit here today I think back on what I used to do and I cannot fathom being able to ever do it again.  Heck, I can't read books anymore!  I can't remember what I've read, so the thing never makes any sense to me.  But you know what?  You find new things you enjoy.  Me?  I've found my artsy-craftsy side.  I knit, needlepoint, and crochet.  I love making silk flower arrangements, wreaths, and what nots.  The craft stores are my new besties.  At least there's one part of my brain that's still alive and kicking!




©Evelyn Heilbrunn
all rights reserved

Having a video camera pointed at you while you are trying to work out isn't fun!  The obstacle course my trainer set up looks easy, but believe me when balance is an issue it becomes a challenge! The good news is, I did it!  https://www.youtube.com/watch?v=qYcZ3W5b6jE





 ©Evelyn Heilbrunn
all rights reserved

http://www.youtube.com/watch?v=2TiX5qBwF7U

Me, my story -- damn glad to be here!








 ©Evelyn Heilbrunn
all rights reserved

I will be climbing with my friend Rick, we have known each other since we were kids. When I mentioned the climb to Rick he asked if he could come with me...I shocked and thrilled that he too wanted to climb for a cause. This photograph was taken in San Diego when I went out to meet tour the lab at Scripps Clinic.

I've known Rick since grammar school.  We grew up in the same neighborhood.  In fact, Rick was my first boyfriend in 5th grade!  When I told Rick about my Everest trip he told me -- get this -- that Base Camp had been on his bucket list since college!  Two old friends who haven't lived in the same town for over 35 years, who saw each other at high school reunions, who occasionally chatted on Facebook.  Our bucket list was exactly the same!  (Oh, yeah -- the handsome guy on the right is Brian, another friend from grammar school!)


 ©Evelyn Heilbrunn
all rights reserved

We can reach beyond are limitations. I too have Parkinson's, I have also had breast cancer twice (my last chemo treatment was in April of 2012). I have always had a dream to visit Base Camp at Mount Everest, in October 2013 my dream will become a reality as I join Summit4StemCell on their quest to climb for a cause. I am so excited, words cannot express how much I look forward to this trek.
Some thought this was impossible, given my medical history. We all need to reach beyond our limitations and not let Parkinson's rule our lives. 




 ©Evelyn Heilbrunn
all rights reserved